1. < Transplants

3 weeks post liver transplant: when will I feel better?

Posted by msfins @msfins, May 15, 2022

I had a liver transplant 3 weeks ago because of an autoimmune disease. I don't feel like myself right now. My face is all puffy and swollen which I assume is from the high doses of steroids. I've always been a thinner person but now I feel so fat and that is weighing on me mentally. My legs are still swollen. If I keep them down for even a short time, they become heavy and make it hard to walk. Everyone keeps telling me to be patient but right now nothing feels like it'll get better. I guess I just stupidly assumed things would bounce right back and that frustrates me. Im so miserable and even becoming more depressed. I tell people that and they make you feel guilty for feeling depressed. I guess I'm just looking to talk to people who actually been thru a similar experience. I would like to know how things went for you. Did you have bad side effects to the medicines? Did you ever get depressed after? Do things actually ever go back to normal again? As far as swelling and water retention. When they lowered your steroids did you lose weight and puffy ness in ur face?

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myfablife | @myfablife | Jun 15, 2023

Footballmum, yes this happened to me last November . I was in acute liver rejection, I was admitted to the hospital put on high doses of steroids and increased my immunosuppressant's. Today my liver test is stable and hope to start decreasing immunosuppressants. The TP team takes baby steps after rejection.
If they were concerned about rejection they would probably have told u this. Did they increase your immunosuppressant meds? R u getting blood drawn every 2weeks to monitor them.
Best of luck hoping all will stable .💚😊

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cromme50 | @cromme50 | Jun 15, 2023
In reply to @myfablife "Hi Vivian, thank you for getting back with me.. I have had -rejection so I am..." + (show)
@myfablife

Hi Vivian, thank you for getting back with me.. I have had -rejection so I am taking a lot more prograf than I would like. I am looking forward to the day I have to NOT take so much celcept or not have to take any like u.
Happy summer and many more days ahead to you.💚💚

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Rejection is gnarly and needs close supervision. Think of your anti-rejection meds as your partners, they allow you to keep this foreign body(the organ) mellowed out and that allows you to live. It can be a roller coaster but you and your team will find what the magic dosage is. It will happen and it will be well worthwhile. Happy summer back at you, honey!

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1 reply
cromme50 | @cromme50 | Jun 15, 2023
In reply to @arqui02000 "Doctors they do not know the reason but my Hepatology asumes the 9 times doctors went..." + (show)
@arqui02000

Doctors they do not know the reason but my Hepatology asumes the 9 times doctors went inside my liver to clean the viles duct MAY BE affected the liver. So for now they control my Hypertension with Nadodol in a couple of weeks I will have the 3th Endoscopy to see if no varices are in my esophagus this is the way I have to live but I am happy to live after the transplant 3 years

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Gracias por responder! You are right, no matter how complicated this all is, it definitely beats the alternative as one only gets a liver transplant when it is the last resort. Each day truly is a Gift! Saludos.

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myfablife | @myfablife | Jun 15, 2023
In reply to @cromme50 "Rejection is gnarly and needs close supervision. Think of your anti-rejection meds as your partners, they..." + (show)
@cromme50

Rejection is gnarly and needs close supervision. Think of your anti-rejection meds as your partners, they allow you to keep this foreign body(the organ) mellowed out and that allows you to live. It can be a roller coaster but you and your team will find what the magic dosage is. It will happen and it will be well worthwhile. Happy summer back at you, honey!

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Hi Vivian, I will definitely look at it that way, thanks again for your input, it really makes a lot of sense when you put it the way you did.💚🌺🌻🌼

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ajdo129 | @ajdo129 | Jun 16, 2023
In reply to @footballmum "Good morning On my recent blood draw report my liver enzymes have increased. Not a huge..." + (show)
@footballmum

Good morning
On my recent blood draw report my liver enzymes have increased. Not a huge amount , but an increase nun the lest. Has anyone else experienced this?

Thank you 😊

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Hi footballmum. My liver transplant was in April 2022. Starting December I have had 4 incidents where all 3 liver enzyme markers have spiked high. The first 3 times I had simple biopsies. The 4th time I had an ultrasound. My liver was doing fine. Mayo is still keeping a close eye on me. I usually have the alksline phosphate enzyme high. I think I am just an anomaly so they keep exploring causes for the spiking.
Just stay in touch with your transplant team, follow your healthy living guidelines. Best of luck, Barbara

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1 reply
footballmum | @footballmum | Jun 16, 2023
In reply to @ajdo129 "Hi footballmum. My liver transplant was in April 2022. Starting December I have had 4 incidents..." + (show)
@ajdo129

Hi footballmum. My liver transplant was in April 2022. Starting December I have had 4 incidents where all 3 liver enzyme markers have spiked high. The first 3 times I had simple biopsies. The 4th time I had an ultrasound. My liver was doing fine. Mayo is still keeping a close eye on me. I usually have the alksline phosphate enzyme high. I think I am just an anomaly so they keep exploring causes for the spiking.
Just stay in touch with your transplant team, follow your healthy living guidelines. Best of luck, Barbara

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Thank you and I will.

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